Nicki’s NMO Story – Taking on NMO One Day at a Time

While 2018 came ringing in with optimism, I was back in school getting my business degree and making moves to start a daycare center for children with special needs. I was working long hours with a successful home daycare that allowed me to be an active parent with my children at home. I had a great routine and things were going very well. To really grasp how life-changing and tragic this would become we have to backtrack a few years…

In early spring 2016, I held a membership to America’s Best. I received a postcard in the mail to come have my eyes checked free of charge. So I did what anyone would do; I made my appointment and kept it. I had noticed that my vision had become a little blurry, but I quickly brushed it off as dry eyes and allergies. However, at that appointment, the eye doctor discovered that my vision had changed drastically (gotten worse by 6 lenses), but only in my right eye. My left eye remained exactly as it had been the year before. The eye doctor updated my contact lens prescription to reflect the changes and gave me a referral to a neuro-ophthalmologist. However, my appointment with her wouldn’t be until July.

A few weeks after seeing the eye doctor at America’s Best, I started to experience some tingling and numbness in my extremities. I contacted my primary care doctor who set me up with a neurologist and ordered an MRI due to my family history of multiple sclerosis. It was this initial MRI that would show lesions/white matter abnormality of the brain.

Neurologist # 1 had terrible bedside manner, could be heard yelling in the hallway, and did not give me the feeling as if my concerns were being truly heard. Reluctantly, he ordered a lumbar puncture and an MRI of the cervical spine. This showed some minor abnormality but he was convinced it was only migraines, even though I didn’t even have a history of headaches.

In July 2016, upon the neuro-ophthalmologist examination, she found that I had optic neuritis in my right eye and that I most likely had multiple sclerosis based off her findings as well as the MRI images I provided her with. She set me up with a follow-up visit and monitored my condition closely.

I spoke with my primary care doctor who recommended neurologist #2. Neurologist #2 monitored me a bit closer, and initially while unable to give me answers, he explained things in a very warm, compassionate way. Unfortunately, this was not the case during the next appointment, where after another MRI of my brain, he said that he too felt I had migraines. He prescribed Imitrex and sent me on my way. I took Imitrex twice, and never again because it made my symptoms worse.

In May 2017, I again experienced vision issues, this time more severely and affecting my peripheral vision. I had what I refer to as “clouding”, where you see as if you are looking into a foggy mirror after a shower. This self-resolved over the next two months.

There was a peculiar pattern to all of this, but no one had picked up on it yet. In the fall, I began to feel an odd sensation in my spine. It was not painful at all, but it felt as if someone was gripping on to my spine between my shoulder blades and then I would feel light pins and needles following the pressure. It would never last more than 2-3 minutes so I never really thought anything of it. It was almost as strange as thinking about the random (although aggressive) hiccups as a true symptom that something was wrong. I mean, we joked about me hiccuping all the time.

This brings me to the most recent and devastating attack I have had to date: in early April, I woke up in the middle of the night with a 103 fever. Within hours, I started vomiting. The vomiting reached a point where I was not even keeping fluids down. I saw my doctor who initially thought possible viral infection, which made sense, after all, it was flu season and I worked with kids. I was advised that if I was unable to keep fluids down by the evening, to go straight to the ER. I ended up in the ER where they also agreed with the viral diagnosis and gave me anti-nausea medicine and IV fluids.

Another week passed and I was still unable to eat or drink, vomiting 4-5 times a day. My fiance brought me to a second ER in the area and I was again sent home although they seemed to be interested in my medical history and digging a bit. However, no imaging was done and I was sent home again on anti-nausea medicine after a bag of IV fluids.

It was now going into the last week of April and I had seen no improvement so my primary doctor started a gastro work up. My CT and endoscopy which happened in the first week of May showed no reason for the vomiting. It showed that my esophagus was becoming eroded due to my condition. On top of that, I was starting to lose balance a lot. The only way to explain how I felt was that I felt as if my body was still moving when I would come to a complete stop. At this point (ongoing vomiting 6 weeks, loss of 30 lbs, extreme fatigue, weakness, unsteady gait) I was only getting weaker and worse as time passed. My doctor finally suggested calling my neurologist (#2).

I went home and immediately called the neurologist. I left a message requesting an urgent appointment. The response I got was nothing short of unacceptable. Someone from that office called me back and said,

“If you can prove your symptoms are neurological in nature, we will see you as soon as possible. Otherwise, your appointment is in August.”

There was a pause on the line. I was in shock. “What exactly would you like me to do to prove it?” Besides isn’t it their job to prove or disprove my symptoms? Don’t I have a right to see my doctor for an appointment at my request when I am an established patient?

I called the primary care doctor’s office and asked that they handle it for me. I felt defeated. I was totally fed up with my situation and ready to give up. I couldn’t get to the bathroom on my own, but I tried, and failed, and fell.

The next morning I told my fiance I was ready to try another hospital. This was the 3rd ER visit in 4 weeks. They were ready to send me home with the same protocol as the other two had. I was so sick I didn’t care, I just wanted to sleep. My fiance pushed for an MRI, even though they insisted that it wasn’t worth it. Well, they got the MRI with MS protocol and admitted me for a few days immediately following the MRI. On the MRI, they found a lesion from C2-5. There was also brain stem involvement which is why I was vomiting all the time.

Once admitted, I started five days of IV solumedrol. The plan was to go to a rehab after steroids and continue with therapy. I was also scheduled for a repeat LP to check for other conditions. In my LP, my IgG was slightly elevated, and my WBC was extremely elevated. I had a case of transverse myelitis. It was also the results of this lumbar puncture that raised the question of the possibility of NMO. On the 4th day of steroids, I spent most of the day in the bathroom trying to have a bowel movement and vomiting. On the 5th morning, the head of neurology saw me. He told me that he didn’t think it was MS.

“I think what you have is neuromyelitis optica. You need more treatment.” He was referring to plasmapheresis. I remember most of the conversation but that I had more questions too. That day, I was transferred to another hospital where they had a specialized neurological wing and I spent another nine days in the hospital.

I was discharged on May 25th and have made tons of gains but I continue to struggle with finding my balance and finding my new normal. I have since started seeing a specialist who has started a maintenance treatment to help prevent further attacks. I have gone from being unable to walk without assistance to now walking on my own. Sometimes I need the support of a walker or cane but for the most part, I can get around.

On my best days, you wouldn’t know anything was wrong with me. I’ve learned to rely on those that support me on my worst days.

In June, I was formally diagnosed by a new neurologist that was recommended by the hospital I was admitted to. Looking back on my history, we feel this it is likely that I have had neuromyelitis optica for at least the past three to four years. I have been blessed with an amazing group of family and friends that support me through this journey. When I become overwhelmed, I keep reminding myself that I can do this, one day at a time.

Thank you for taking the time to read my experience with this disease. It is my sincere hope that if you know someone struggling with a diagnosis or going through what I was going through that they find hope and answers.

The Sumaira Foundation for NMO is a 501(c)(3) organization dedicated to generating global awareness of neuromyelitis optica spectrum disorder (NMOSD), fundraising to help find a cure, and creating a community of support for patients + their caregivers.

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